Thursday, May 28, 2015

Condolences to Diane of The Pink House on the Corner blog. Over the past three years I've blogged about her and her husband, Bob. She was his caregiver after his massive stroke. He passed into his next stage of life this morning.

Today has been a slew of emails sent back and forth between the rest of the stroke tribe. What can we do for her? Does anyone know her real last name? What is her mailing address? She just moved into a handicap remodeled house for Bob not four months ago. Anybody have her phone number? It's been over an eleven-hour conversation and will continue because we care.

The internet is great. We live our lives here (most of us). We develop friendships and some long lasting ones. That's the way it has been for me for almost thirty years. This is the main problem with virtual friends when we actually want to be there.

Through her blog, we've traveled many a hilly road together. The ups and downs, we've offered her the support of listening ears and sometimes financial help by donating on her site. We were invested in her and Bob. Isn't that what following a blog does?

Same as this blog, readers watch for updates and news. Now I realize some readers are just passers-by, but I also have readers who truly care what is happening at the Murphey Saga household. I know I can count on them for virtual hugs and prayers. Diane was one of these. So my heart aches for her at losing her beloved. I don't truly know her pain yet, but it's coming. I've shed tears of grief and joy for the both of them today. For Bob, his pain and suffering is over. He can again laugh, speak, move, and be the Bob that was always inside of him after his stroke. For Diane, there is an out pouring sense of loss that I know she's feeling.

When I think of the two of them, in my mind plays the song by John Mellencamp, Jack and Diane, but for some reason I always substitute Jack for Bob. They were such free loving people before the stroke devastated their family. That's the way I see them.

Wednesday, May 20, 2015

My DH seems to be rallying this week her managed to fill a whole urinal yesterday, but that's what four kidneys will get you. Yes he has 4 kidneys. It is thought he absorb his twin en utero. His pain levels have dropped to five out of ten with the pump.so he feels more human. I bought a goat bell so I can hear him if he needs me. All he has to do is push it across the bed table and I'll hear it even when I'm outside. Yes, it's that loud. Scares the cats and dogs. Each day we take the time to live, laugh, and love every moment we can.

Our youngest is in labor with her son, Connor. In fact she's been in labor with contractions five minutes apart for over a week now. The doctor is waiting until her water breaks before doing a c-section. He giving Connor every moment he can to give the baby time to strengthen and age before delivering him. Our daughter isn't due until June 16th.

Me, I'm hanging in there. I'm still doing my dry needling with Botox injections on the 4th. Yes, I'm going to do another series of shots. There's just too much going on to even try to do without. My forward progress has stopped and am now on maintenance to stop the pain so I'm pain free. A huge blessing especially now.

Tuesday, May 5, 2015

What barriers do you encounter in your daily
life when it comes to disability?

As you can imagine only having one side of your body totally undependable and not having the ability of clear speech is definitely limiting.

Until just recently, I could not stand and walk for any great length of time or distance. The spasticity in my lower leg from my stroke made it too painful. I couldn't push a grocery cart around a store for more than fifteen minutes. Try shopping in Wal-Mart like that. Since the dry needling has shut down the spasticity to a dull roar, it's considerably easier getting around on foot power alone.

With my shoulder regaining most of it's mobility, thanks to the needling to my bicep, I'm able to carry things positioned between my elbow and body, and under the arm better. It's almost like being normal again. Well sort of. The headache of how I was going to carry a drink while walking with a cane in my functioning hand is remedied. But still not being able to use my right hand and wrist is very limiting.My speech though improved is still halting with the aphasia. I'd rather do emails than talk on the phone. Staying on topic is still problematic. The chronic fatigue is better but still a long way from being ideal. I still us the twelve spoons to measure my activity and energy level. I often fall short by the end of the day even with naps. This past week I had to do the grocery shopping over a three-day period just to get it done. That in itself was exhausting. Add my therapy sessions at two times a week and it had me going and going.Now that I'm basically out of pain from the spasticity, (hip hip hooray!) my Fibromyalgia decided it was its turn to override its medication for about 48 hours. My spine from previous surgeries ached to the point of me yelping when I moved it. My one functioning hand refused to close it a tight fist. I ended up prying my fingers loose on my nonfunctioning hand in order to hold onto something tight enough.

The temperature has been reaching the mid 80's and I have yet to turn on my air conditioning because of my hubby. He's still wearing long sleeves and has two blankets on his bed. Meanwhile, I'm pouring sweat like a nervous bridegroom, and my heart is not behaving because of it. I've had to double my arrhythmia medicines to keep my heart rate below 120 BPM. I'm just disabled in too many ways! There are just too many hurdles to juggle and jump.

Most times, I can do what I need to do and still finding alternative ways of making forward progress. Very little blocks me totally. I'm adaptable that way. But if anything takes two hands to operate, I have to wait on others to assist me. That becomes a royal pain like the yard work. I still can't operate the chain saw, hedge clippers or lawn mower safely. So with the warmer temperatures and the rain, my yard has become an eyesore while I wait.

Sunday, May 3, 2015

How many of us sit at our desk too much? I'm raising my hand. How about you? How are you at multitasking? Can you walk and chew gum at the same time? How about walk and type?

If you have about $500 to spare then I've heard of a solution for you...

The Trek Desk. It fits over any standard treadmill. Is this cool or what?

The idea of having one of these is a great idea, but there a couple of things that hold me back from running out to purchase one with my life style.

1) The cost.
After my stroke any hope of keeping my meager nest egg flew out the window. Continuing therapy is a borrowing from Peter to pay Paul thing. Luxury items, which category this would fall in, are taboo for my budget. Yes, there is no denying the health benefits it offers, but still it doesn't produce an income so, it's not going to happen.

2) Space.
The average treadmill's dimensions are 71 x 31 x 53 inches and weighs 139 lbs. Which you have to purchase separately. (http://www.dimensionsinfo.com/treadmill-dimensions/)
The Trek Desk is 34x 72 inches.

It could almost be a DYI project, hmmmm

It takes up space and dedicated space too. It's not like you can slide the whole contraption under you bed or stick in in the closet when not in use. I could see a narrower version to go across my cross trainer working better. I still have yet had the time to workout for thirty minutes on my NordicTrack. I'm also looking to downsizing my life rather than fill it up with things.

3) Dedicated time.
Now I could see use in this if all I did was sit at my desk all day, but that is not the case in my lifestyle. I'm up and down, and all around during my computer time. I may check my emails (deleting junk), read a couple and then have to go pee, empty urinals, change a diaper, cook, shop, play with the dogs, or talk to the hubby before I go back to my desk. I think the longest uninterrupted time at a stretch on my computer is 1/2 an hour. Although I will occasionally I might stream a movie or TV show, that only happens on rare occasions, but I'm still getting interruptions.
I'm out in the garden, at my spinning wheel, knitting, caring for animals or my hubby to spend too much dedicated time anywhere. I did purchase a sitting stepper off Amazon. It does help strengthen my calf muscles while I do sit. I can start and stop doing that in an instant. Every little bit helps.

I definitely have a coordination problem since my strokes. I can't talk and walk at the same time. If two things involves focus, I have difficulty. My concentration is not as bad now as when I had my strokes, but I still have difficulties accomplishing two tasks at the same time. This is what males who can't multitask must feel like. Boy, this totally sucks. Before all my male readers get up in arms about what I just said, it is a proven fact that females are better at multitasking than their male counterparts. Guys don't take it so hard. There are tons of stuff that you are better at than females. I can't think of anything right now, but don't mind me. I'm brain damaged.

Well, this is another item that goes in the folder as "It would be nice but..." for future reference. Maybe if I win the lottery...have an unknown relative pass leaving me $$millions$$... or maybe when we populate Mars. This is just my two cents on this product. If you have the space for it, the time for it, and a few hundred to spare...go for it. It sure beats sitting on your duff all day. Kill two birds with one stone. Get your exercise while surfing. Great idea, but it just isn't practical for me.